Stephen's Journey: Slight Change

Friday, August 16, 2013

Slight Change

Bill took Stephen for labs in Virginia on Thursday (his first time taking Stephen by himself to an appointment and he did great!) and his white blood cell count and ANC came up slightly, but not enough, so Stephen will need three more neupogen shots this weekend before we repeat labs next Wednesday at CHOP. Thankfully, I'm headed out of town, so it's up to Dad and Nana to conquer the shots! But after our "training" session last night, I'm confident they'll do an A+ job!

I'm actually on the train as we speak, passing through my home-away-from-home, Philadelphia, en route to NYC to spend the weekend with my best friend. And very excited about it! And also pretty excited for Bill that he gets to spend some good TLC with Stephen. With all of our (Stephen and I) travel lately to CHOP and with Bill's busy work schedule, they haven't gotten to spend as much time together as they both would like. Bill is certainly Stephen's favorite person right now and vice versa, and I know they'll have fun together this weekend! And hopefully I'll have some super cute pictures to share of my two favorite people.

And then it's off again to Philadelphia on Tuesday for a clinic visits at CHOP on Wednesday and hoping his numbers continue to improve and I can't stop worrying so much! Ha! Yeah right!

2 comments:

AnonymousAugust 17, 2013 at 11:39 AM
Wishing you a really fun and relaxing well deserved break. You are a superstar!
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AnonymousAugust 26, 2013 at 7:47 PM
Hi Lindsey,
Hope you enjoyed you time in NYC. I love that city--so many things to do and absolutely anything in the world you want to eat. You deserve a break!! Sorry I haven't been in touch, but the hard drive crashed on our computer and it was in the shop for over a week. I am just now getting it back to normal with all the new settings. The first thing I did after getting it hooked up was check on Stephen's blog--guess what--the new security they installed would not let me in...I was on the phone pronto and now I am finally able to connect. Sure hope you get a great report at CHOP tomorrow. We will keep you in our thoughts and prayers....

Love,
Aunt LuAnn and Uncle Dick
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Our Crazy Kidney Life

As many of you already know, our son Stephen, was born with a very rare kidney disease called Autosomal Recessive Polycystic Kidney Disease (ARPKD). When the disease was discovered during my 27th week of pregnancy, Stephen was given a less than 1% chance of living more than a few hours past birth. He was to have such severely underdeveloped lungs that the doctors said he would likely not even take one breath. However, on January 4, 2011, we were granted our 1st miracle - and Stephen came into this world crying (and breathing!) and fighting for his life with fierce determination. At 6 days old he had BOTH of his kidneys removed and began peritoneal dialysis. Stephen came home from the hospital when he was 59 days old requiring 12 hours of dialysis every night as well as enteral (feeding tube) feeds during the day and overnight.

On May 9, 2013, we were granted our 2nd miracle, in the form of a new kidney from an extremely generous friend. Stephen received a kidney from a non-related living donor at the Children's Hospital of Philadelphia. He spent 13 days in the hospital recovering from his big surgery and ever since has been living life the fullest! His life is still a delicate balance of medications and weekly lab work, but he's an extremely vibrant, loving, active 2.5 year old.

This blog is Stephen's journey told through my eyes (his mother's), thoughts, and emotions, with extreme highs and lows. But there's no way we would be where we are today without all of the support, thoughts and prayers from our family, friends, and readers! Thank you!!